It’s a question that comes up often and one that really only has one answer. There isn’t enough money in it for the pharmaceuticals and hence they have no incentive.

Ayòbámi Adébáyò
debut novel

Stay With Me’ deals with the trauma of sickle cell on the lives of lovers, family struggling to cope with the disease under the pressures of a turbulent Nigerian society. The deaths of two of her close friends in their teens, and the effect on their families, were the tragic inspiration for the novel. Each crisis is harrowing. “I just couldn’t stop thinking about what it meant for the mother,” she says, recalling how she would still bump into the mother of one friend occasionally. “Not just to experience that kind of loss, but to somehow get up the next day.”

And so the central character of Yejide – a beguiling combination of vulnerability and strength – “just came to me”. The idea started as a short story, which she “sat on for a couple of years, maybe longer”, but there “was just something very vivid about the character that I had to pay attention to”.

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15 years old Young Campaigners

It’s really difficult talking about Sickle Cell when since birth that’s all Ive ever known, so its hard to imagine living without it. I watched play called ‘Blood Sweat and Fears by Maria Odhodi and I could relate to the main character’s struggle to fit in and his reluctance to share his secret with anyone to disastrous consequences. Previously, I had a great fear of discussing it publicly for fear of being stigmatised by others. And school life as you can imagine is awkward and challenging especially during PE.

I’ve got involved with other children from the Sickle Cell Support Group who have lots in common and is a great opportunity to have conversations with others going through the same experiences as myself.

I got involved with other organisations such as the Roald Dahl Foundation, together we developed a Google Appstore called ‘George and the Dragon’ to educate people about living day to day with Sickle Cell through my own experience.

Ade  A sickle cell patient
Life with sickle cell

Many of you reading this may have sickle cell yourself or may just want to know more about it. Either way this is just some insight into how sickle cell makes me feel and how it may make you feel as well. I am among the estimated 14,000 people living with sickle cell disease in the UK. Sickle cell disease may affect us in similar ways physical but mentally it can affect us differently.

I have never needed doctors to tell me I was different than everybody else, I’ve always felt it. In every football match I’ve ever done, no matter where it is, I have always been the first to have to sit out and take a break, while I watch the others play on. I would always be the one that’s not allowed to join in the fitness test because my mother was too concerned that I would push myself to far just to try and keep up with the other kids. Out of my two siblings I was the one that was not allowed to go camp because was on oxygen at night. All of these things made me feel excluded and different. This is how sickle cell makes me feel, but how does it make you feel.

However it makes you feel just remember you are not alone! As I mentioned earlier there are round another 14,000 people with this disease in the UK alone! And an estimated 300,000 people globally so there are others just like you.

Anyanna Ndukwe,
Ex Chair LSTG

Ex Chair, Anyanna Ndukwe states that “Doctors are so easily bored with treating sickle cell patients, because most of the time what they focus on is pain management only,” she says. “They really have to focus on the whole patent wellbeing.”

Everyday normal events can “cause triggers,” such as stress, dehydration, and extreme temperatures, can lead to mild to severe pain crises. “– managing stress, drinking enough water, and making sure that patients do not over exert themselves is essential aid recovery.” It is important that education and social care policy makers pay closer attention to the needs of young suffers in particular to help prevent isolation of needs.

Our work is aimed at bringing people together and building strong relationships through our work with families that suffer he illnesses; promoting life-style management for sufferers means their lives and management of their illness can be improved. Even small things such as enabling parents/carers and sufferers to get out of the house more and enjoy activities those without illness that many take for granted is precious and vital help to support mobility. We will run social & cultural activities for children with sickle cell ~ special provision as they are excluded from certain activities due to the illness. Tailored activities are needed to avoid ‘triggers’ for children with sickle-cell that can bring on bouts of pain or a sickle cell crisis:

Our activities help build up confidence & self-reliance on the children, with tailored social & cultural opportunities and a chance to experience new activities & socialise more. Sickle cell is often a life-shortening illness, but management of the illness can help to extend lives & lead to a better [and more creative] quality of life, young sufferers will be better able to manage their illness and understand their boundaries better – whilst improving access to opportunities & activities.

Share Your Story

Do you suffer from either Sickle Cell amnesia or Thalassaemia disorder; or know somebody who does. Then please share your story.